“Three things cannot be long hidden: the sun, the moon and the truth.”

As my legs and now arms continue to betray me, I can honestly say my greatest fear in life is becoming uncommunicative, bedridden and losing my sense of purpose and significance in life.

Nothing new has happened, this is just the way I’ve felt for a long time and have told very few. Why? Because most people just won’t understand. It’s just that life can be unknown, real and very scary for any person living with a chronic illness.

In my case, I haven’t significantly responded to any therapy with the exception of chemotherapy. So right now, I’m feeling a bit bitter and put out. I need to get it out of my mind that my MS is not a common cold. I have an incurable chronic progressive and often disabling disease.

In truth, I put this out there so I can essentially release this fear. I do that so it will not inhibit me from doing what needs to be done in this present moment. I’ve watched people become mentally engulfed by their illness. Their happiest memories are trapped in their past and they feel that their future is so unpredictable that it’s difficult to see any light. That was me. I felt like I couldn’t breathe without inhaling fear.

But now I face my fears with the truth. I understand my circumstance and I don’t worry about the things I can’t control. When I’m in my darkest hour I try to look for the light. And that light is here. It’s right now. It’s this present moment.

I know that I can control what is happening at this moment. It is my choice. So I choose to…be happy.

Hi Nicole,
Thanks again for being real, and I think you correctly separate your fear from worry to look at the truth and facts of our disease objectively, and deal with them. I too pray and have faith, which may be why I don’t worry much about my health. However, my fears of losing mobility and functionality of my body were sufficient enough to cause me to take action to avoid such a time if possible. Thus, my focus on weight loss and physical activity which led to my beginning to run! So, Sunday 1/26/2014 I’ll be running my 1st 1/2 marathon and devoting this effort to everyone who has MS and cannot run or walk, and more specifically the completion of the 13.1 miles will be dedicated to you in honor of you contributions to those of us living with MS through your writing, and most of all for keeping it real!!! Thank you and keep on keeping on!
Your Friend,
Tim

Once again you’ve put in words what I haven’t wanted to admit to anyone, even myself. My arms are getting weaker. There, I said it. I have no muscle function from the chest down, so I NEED my arms for everything. Dragging my immobile body in and out of bed, on an off the toilet, in and out of the car, etc. Takes an incredible amount of arm strength (wish I could lose like 60 pounds!) I swim for an hour every morning, rain or shine. In winter the water temperature gets down in the 60’s, but I don’t let that stop me. Just lately I’ve noticed after 45 minutes of swimming, my arms are so exhausted they’ll barely move. I’m tempted to end my swim early, but I’m too stubborn to give up.

Anyways, thanks for being there, Nicole. It’s good just to know there’s someone who knows how it feels.

Hi Nicole, I also have MS and Fear in always on my mind, but I have to put it in the hands of GOD, I have a infusion each month, I have migraines’, I need to educate myself a lot more on MS, I have had my headaches for 30 yes. So I got a second opinion, and my New Dr. Stated the whole time I had migraines I have had MS. Ive been going to my new Dr. For4 years. You have a very positive attitude and that is awesome, we have to keep on keeping on. Take care, best of luck to you.

Nicole, Your blogs are always food for thought. . .today’s especially. I’m just moving into a power wheelchair with all that uncertainty, and reading your words remind me that I’m not alone. Thank you. Sometimes I try to put my thoughts along a line :
Trust _________________________________________Fear. When the fear crops up, I try to ease it along that line into trust, trusting that I will be able to handle/adapt these things that I fear. It doesn’t always work, but it helps me put things in a linear order and I suspect it side tracks me for a while. Keep up the good work, lots of us need to hear your voice.

Hi Nicole, You write beautifuly. I have such respect n hope for you.I hope you will continue to the MS yoga classes. I pray for you n have faith that there will be something soon that works for you. Hugs

keep doin what you CAN Nicole Im rooting for ya been following you and your journey a few years now. As you know I also fight the MS monster daily. Glad we have several therapy choices available to us, we need a cure but until then we have HOPE. Keep writing and letting your light shine for us all to see and learn. You touch me every time I read something you have written. YOU GO GIRLFRIEND!!!!

I understand your fear – I have it too. Although my MS has affected me in different ways (cognitive) it has still taken so much of my life. As a mother it scares me that I will not be what a “good” mother is, even though I know better! You inspire me to be in the NOW. Enjoy what I have. Thank You. I will choose to be happy and be my best.

Hi Nicole so glad you are sharing this with us. I have used the expression “the light at the end of the tunnel ” so many times with my children when they were going through different things trying to keep them positive. However, in regards to my MS i ‘m not sure that expression applies to me. I do try to stay positive and I am thankful as I feel there is always someone out there that has things worse than me. Again thanks for sharing, you are in my thoughts. I look forward as always to your next post.

I too am dealing w/ a situation similar. I’ve already lost function of my legs and my predominant right arm. I’m a painter and have taught myself to paint w/ my left hand (which was challenging but doable!). I fear losing use of my left hand. I paint for hours everyday- it is my “happy place” and great therapy! Losing that is a thought I shudder to think of! But if that happens I will take on the next challenge.

Hi Nicole.. I to have had similar feelings and thoughts.. I do not want to be a burden on my family.. that’s what I fear most.. that I will need someone to care for me for every aspect of my life. Discussed it? I have with my hubby and he says ” we will cross that bridge when we reach it”.. I think the response comes in part because he does not want to dwell on what the future of living with MS may be, and also that he wants me to focus on the things that I can control.. my happiness.. about what is right now.. Glad to know that not only I harbor such thoughts.

Well said, Nicole. I just came out of a 3-month hellish depression where I was incapable of choosing happiness. Fear, loneliness and despair were my only companions. It lifted last Sunday and it’s great to be alive again – with my slowness, limp, slurred speech, numb hands and feet, etc., etc., etc. I enjoy your blog immensely when my heart and mind are open. If I’ve misspelled anything, please don’t correct. I used to be a great “speller and grammar” person and now that sometimes escapes me. Please enjoy your day.

My dear Nicole, As I read your writings I am slowly getting a bit of how you feel, albeit I will never be able to walk in your shoes, your emotional journey with ‘the unknown’ MSfactor touches my heart. While I read I cannot erase the picture I have of you anyway… which is Nicole the writer, the activist, the person living with MS, the Nicole who educates others who need to be educated about MS, the Nicole who offers support and a feeling of safely to others walking the same road, the Nicole who inspires the world to stay strong and soldier on. May God Bless you and Keep you. You are an awesome human being xxx